Tag Archive for: cerebral palsy

New ink, memories and finally seeing myself…

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I sat on our porch, overlooking the Great Smoky Mountains. We were nestled in a beautiful rental for the week, where we as a family had already made some everlasting memories. From the spectacle of Pigeon Forge: bright colors, King Kong hanging on the side of a building, dinosaurs, amazing food at Flavortown and so much for the senses to absorb, to Gatlinburg,(so much Ripley’s!) to the breathtaking beauty in the National Park, we enjoyed every single second together during Spring Break. It was a perfect mix of relaxing, laughing and holding on for dear life while riding on the many roller coasters at Dollywood. 

Our week together was about half finished as I wandered out to the porch after dinner. I had begun Theo of Golden by Levi Allen just a few days earlier and couldn’t wait to keep reading. What an astounding novel! The day had been full – seeing, wandering, worshiping as we enjoyed the outdoors, so relaxing in a rocking chair with a fantastic read was a delightful thought. My boys had gone on a hike and my youngest and her friend were giggling somewhere else in the cabin. 

Just as I was engrossed in Theo, I heard the screen door slide open behind me and the girls burst onto the deck.

They were pure joy! The giggles, care and more giggles from these two teens made my heart burst. Their “finishing each other’s sentences, harmonizing and just getting one another” connection was a wonder the whole week. This evening, they bubbled out, full of presence and quickly sat crisscross apple sauce by my feet. I smiled and closed Theo…

I watched Jasey move behind my daughter to braid her hair while my Sky held a shiny foil tube of henna and stretched out her leg. We had given them to her last year for her birthday and many times, I have watched her doodle, create and mesmerize with the “ink,”  on her friends or self. Her artistic talent is a wonder to me, whichever medium she chooses. She often will sketch in the evenings and never fails to astound us.

I can almost see her brain at work when she applies henna. I can’t describe it, but her artistic visions come out beautiful every single time. This time was no different, she began drawing a flowing, graceful, “hopeful (her words)” sunshine that I could nearly feel. She kept adding to the art on her leg and I could not take my eyes off her or her drawing. 

I am a huge believer of “moments,” becoming memories and for whatever reason, this one felt very precious to me. Maybe because I love the stories that are tattoos and the artistry. Maybe because I am truly jealous over her ability to create. I have entirely different talents. Maybe it was the dopamine from vacation, although I would say that I would’ve felt the same at home with her artistry, because I have. Mostly, the moments and her art are just magic. She finished drawing a while later, the boys returned and we got busy listening to my son strum his guitar and listening to nature, hoping we would see the black bears. 

The next day we explored The National Park again, the rivers, winding roads, lush vegetation and dappled sunlight that filled every crack between leaves and showed God’s artistry. 

I found myself torn; both awe and frustration as we stopped and explored. The bumpy, rocky and sometimes root-covered paths made keeping my balance so challenging. Even though my family walks with me, holds my hand and tries to anticipate all the help I may need, I still stumbled and before any of us realized, landed gracefully on my butt. It was too easy to feel like a burden to them.

The frustration is so real and so is my gratitude. 

My journey with my body, all the emotions, including a lot of anger, frustration and blaming my body for CP has been as long and as arduous as those paths in the national park. But it is one that I continue to traverse, because I know how much God himself calls our bodies, temples of the holy spirit. 

I listen to countless clients, friends, strangers and others beat themselves up, shame their bodies, engage in countless diets, difficulty and self hatred because of our bodies. 

I get it. And I’ve had my own emotional struggles, and have been working hard to find the love for this body that I encourage clients to seek for themselves. 

Here is the honest truth for me…it has been much easier to point anger, disgust and even close to hatred at these legs with CP than it has been to love, honor and care for them. For years….

But, God is, as always, working to redeem all the things of this earth, especially us. He has been doing more work in me than I have words for..

As I had sat watching my beautiful daughter create, and as I took in the wonder of God’s artistry of creation, (still absorbing the adrenaline from that fall), something whispered inside, “I also created those legs…and they too are a wonder…” 

The next morning, I asked Sky to create a similar drawing to hers on my leg. I just loved it so much…

She so willingly obliged. 

As she finished, it took my breath away. It was so pretty on MY leg, which made MY LEG PRETTY. 

As the morning went, dishes were drying, giggles continued abounding and plans formed for our last day of vacation. I couldn’t stop staring at the art on my leg, letting the henna dry so the picture would be deep and lasting. I walked to our room, sat on the bed and again looked down at my leg. 

“Babe?” I called to husband. His smile entered our room first, then he was beside me, also looking at our daughter’s art on my leg. “I think…”I said slowly…”we need to go the Black Orchid. I am not sure I can leave here without this being permanent.”

Before I go further, I need to tell you that I am not a stranger to tattoos. If you look back on my blog, there is an entire story about the meaning of the sleeve on my arm. 

The other thing I will say is that our beautiful son, just two days earlier had told us that he needed to add to his cross tattoo while we were here in Tennessee. He did a lot of research and had landed at the Black Orchid. He came out of there with a beautiful vine wrapped around the cross tattoo on his forearm. We were all in awe of it, the way it represented life, Jesus’s death, the beauty and new life that IS because of Jesus’s sacrifice. For me, it was also a beautiful memory of the trip, our time together and the wonder of it all. 

So…the Black Orchid was not quite as random as it seemed, though the idea of me putting a big tattoo on my leg must’ve felt that way…

Husband held my hand, the knowing look of our 24 years together on his face. I couldn’t put it all into words…and the love and life between us held the grace for the “suddeness of this idea,” and his trust in me. 

We began talking logistics, budget and the details of my hope for new ink out of Sky’s art.

“Let’s just go see…”

So, as we headed back to Pigeon Forge with a agenda for the day, I left the henna on my leg. 

For the last time of this trip, we took it all in, colors, the feeling of being dropped into a carnival, and some beautiful restored cars that were rolling in for an upcoming car show. My boys were in heaven!. 

We rolled up on the Black Orchid to find a bunch of the artists chatting outside. My son got out first, quickly getting a handshake from his tattoo artist. 

“Sal,” was quick to hear my idea. He disappeared for a few minutes after taking a photo of my leg. 

He came back a few minutes later with a price and excitement. His estimate was far less than hubby I expected. My heart just knew that God was doing something…

An hour later, my boys returned from all their “car exploring” to pick us girls up. Sal had beautifully tattooed my daughter’s beautiful design, from my knee to my shin. (And updated the very first tattoo I got in my 20’s, an icthys and the verse, “My grace is sufficient for you, in your weakness, I am stong.” (II Corinthians 12:9) The new and the old on these legs went so beautifully together.

It changes me…

I can’t love her art, see God in it’s beauty and fullness on my leg, and continue with anger, disgust and negativity about these legs. 

It represents God at the very center, his immense beauty and how he holds it all, between the sun, stars and moon with such gorgeous tenderness, even me (and this body with CP).

There are a couple Disney references, because of course there are! The lanterns, an image of how the king and queen (from Tangled) never gave up on their daughter (My Jesus is even truer, has never given up on me, these legs or this body). Also, the lanterns are the beginning of Rapunzel’s new dream (finding peace in this body is mine…).

Put it all together, on my leg and it is a vision…

It is an exercise in me not shaming these legs or trying to hide them any longer. It is deliberate beauty, from just below my knee to my ankle that certainly will get noticed because my artist is amazing and deserves that. It is release from a lifetime of complication and negativity, literally finally embracing the sun and how glorious it feels. It is the continued redemptive work that God himself does in my heart, body and soul, every minute of every day. 

So, I came home from Tennessee with so much more than beautiful permanent artwork on my leg – though that in itself is pure joy. I came home with a million fantastic memories, the awe of other parts of country I had not yet seen, more love and gratitude than I thought possible and the healing and new perspective that only God can give. I am forever grateful for it all.

Be sure, God is here for you. He sees, with such gentleness, your biggest insecurity and shame. And he LOVES you with it. He just loves.

I pray you see yourself with all the beauty that he created you with. I pray we can all remember that we are all fighting our own battles, that kindness and beauty heal so much more than hate and that you are always worth the work of healing. And the next time you are standing in line, somewhere, anywhere and you notice tattoos, ask. There is probably an incredible story embedded in all that ink.

xoxo

Both/And

Psalm 34

 

World Cerebral Palsy Day 2025

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What a thing to be both so proud of this community, and to wish there were no such battles to be fought, endured and victorious over because of CP.

In an ironic moment today, I visited Dr. Rush because my body has been having some extra muscle spasms for the last week. As he was giving me a steroid shot, I mentioned that it is World CP Day. He smiled and said, “We need an anti-CP day.” Agreed. And in that sentiment, we in this community are so many things.

I wrote this piece with such pride, honor and hope. If you know someone with CP, loves and cares for someone with CP, please take a moment to honor who and how we are in the world. If you don’t, we are all pretty badass and have lots to share. We would love to tell you, today or any.

 

https://cpresource.org/topic/policy-advocacy/world-cerebral-palsy-day-2025

 

 

 

Every moment, a gift.

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I am not entirely sure when I really understood that we are not promised tomorrow or even really the next hour…

It may have been with the death of my beloved Gram. She was there, always there when I needed her. Until the knock on the door, the news that she’d died very suddenly without warning in the night.

Maybe it was going through the many deaths of high school students in my first social work job after Hope College. The loss of Gram gave me empathy for the students I met who grappled with the instant losses of friends, whether through car accidents, unknown illness and other reasons. I understood the shock on their faces, the anger, inability to understand a sudden, mortal reality and the pain of things left undone.

Yes, I really began to understand it then. But on a September night 25 years ago, the reality of our mortality hit me like a tsunami and I’ve never been the same.

A boy I loved, some extremely poor decisions by others and the instant death of 3 people taught me both how very fragile our time on the earth is and how every moment is a gift.

I would be lying if I didn’t acknowledge that my beliefs are also wrapped in the fact that I do not believe in entitlement. We just are not really entitled to anything as we live here. Not our health, our livelihood, our loved ones. I personally am not entitled to walk across a room like everyone else. But that I can walk at all? Well, THAT, like everything else I am given, is a gift.

My breath, my heartbeat, and my health. The sun on my face and the rolling clouds. My marriage and healthy, amazing kids. That I get to learn more about trauma and treating it every day; that I get to hear people’s hardest moments, deepest fears and greatest difficulties? Gifts, along with the moments of change, triumph and peace that come with the hard work of engaging in counseling. That those enduring unimaginable loss tell me that they feel hope? Gifts.

My son strumming Blackbird on his guitar or asking me to go for a ride in the Jeep he rebuilt? My daughter giggling with friends while making cookies or learning a new TikTok Dance? The love of some of the best teachers on the planet? Absolute gifts. Trying on homecoming dresses and having your older sister join the fun just because? A lightning show and pouring down rain? My oldest soaring to new heights as her life continues to unfold. The look on my love’s face, well, anytime? GIFTS. 

You may think I am sappy or really sentimental and emotional…or shake your head with bitterness, “must be nice Stacy.”

Here’s the truth. This perspective for me is the real deal, because I see, hear and experience the hardest moments and absolutely, don’t want to take a moment for granted.

I had a few very hard days this summer when I honestly wasn’t sure if my muscles were going to calm down and stop spasming. I was scared and longed for peace. Thankfully, thanks be to God, they did. But even as I am still re-learning how to walk, I am so grateful for how I came through those days. Even when I am irritated that I am STILL re-learning, I must return to gratitude that my muscles are not hurting at the level of those days, currently.

Though it will sound cliché and a lot like the chorus of an Aerosmith song, I really don’t want to miss a thing. I don’t want to miss a minute of my son’s senior year because there is a drumbeat telling me how fast this time goes. I don’t want to begrudge these hot days (even with, ahem…hot flashes,) because I am all too aware of the cold that will come here in Michigan. The late nights waiting for teens to get home, the moments with aging family members. I don’t have enough time for it all, I can’t be present enough and yet, I don’t want to miss anything about the people God has blessed me with, the life I am given and the moments…that all matter.

Before you think me as that idyllic mom or human, know this. It is not perfect. I expect too much sometimes, lose my shit in other moments and make big mistakes. I say or do the wrong thing, struggle with my own insecurities and get impatient. (We all wish we could miss those moments!)

Yet, the not missing those either is this: I get to be humble, apologize to my sweet family and give them a model of a really human mama. I get to pray with them, ask forgiveness and learn from them. We get to testify to the fact that grace abounds, that God’s grace IS SUFFICIENT and that HE is the giver of every good and perfect gift.

I always dreamed of raising kids in way that these were not just things we said, but instead, the real life reality among us. I am so profoundly grateful that I think we have.

We love people, believe in the good, life-giving presence of Jesus and because of it, every moment truly IS, A GIFT.

I don’t know where life finds you as you read this post. Maybe some roll their eyes and think I am saccharine. Maybe others have met us and see some version of this or DON’T. Maybe my hope and belief in the good makes you angry because, you think it is BS. And still others might wholeheartedly agree.

Whichever it is, or maybe another altogether, I want you to know, I think you are a gift. I pray you see, feel and know how important you are to others and to GOD himself. I pray you experience gifts every moment, the blessings and love of others, the sovereignty of Jesus and the hope of all that is yet to come.

I think I hear Aerosmith playing in the background….

Both/And

XOXO

Starting to remember…

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If you read my last post, you already know that there was some serious both/and going on for me last week, with Jesus, with living with CP and with the work I get to do with clients. I have a pretty cool follow up to share…

With all my wrestling last week, reading the book of Mark again (different at this point in my life,) and struggling with some pain and frustration due to re-learning my body post-pump implantation, I was pretty weary. I came to Friday which in some ways is my Sabbath after a busy week. I’ve been struggling with some insomnia due to some muscles and joints over-compensating for the new learning and still trying to figure out my balance. I was frustrated that God was “silent” about these issues, at least from my limited perspective, and there was a lot more output last week and a lack of input on my part to recharge. Friday was a perfect emotional storm for me (bless my dear husband!)

After some fantastic “therapy” with my dear friend and hairdresser, Kim, I spent some time trying to connect with Jesus, but felt stuck. I tried to journal, but just felt mad. I tried to work out and that only seemed to frustrate my already frustrated body.

Hubby was so wise, listened as I finally cried, “what if this is the best it gets?” I was referring to this “new body,” post-pump surgery.

“It’s not, we’ll get it figured out. Go see Luke.” He hugged me tight.

Luke is my physical therapist. He is the best combination of listener, encourager and coach in regards to recovering or relearning this body. I have seen him off and on for many years, as CP is not a one and done in terms of rehabbing. He is so familiar with my body’s quirks and is able to push me when I need it, reframe my frustration and cheer me on with the efforts of recovering. I am so thankful he is on my team. He also loves Jesus, which is an added bonus.

I warned him as he entered the room I waited in that I was going to cry today. He smiled and stated, “I’ve got Kleenex.”

I gave in to the frustration and weariness of the day, the fear that this was my new normal and also shared my wrestling with God. I lost count of the Kleenex I soaked for a few minutes.

He was reassuring as always, saying to me, “it is too early to know what your body will do with all the changes. We will keep working on it. I don’t believe this is as good as it gets for you.”

I sighed, thankful that he believed it and we got to work. An hour later, I walked out a bit easier, grateful for his perspective and professionalism, ability to help me understand these muscles better. I also always feel like these appointments are a gift from God (even though the efforts sometimes make me swear under my breath.)

After a stop at my favorite gift shop for a tiny bit of retail therapy, I felt another nudge in my spirit.

The wrestling as I was reading Mark had me stuck and I was not ok with that. I sat in my car in the sun and dialed my dear friend and Pastor, Ross. It was another few minutes of God-appointed conversation.

My tears again flowed easily, but as I fought my vulnerability, I also was grateful to be known and safe in my humanness. Ross is a great listener, encourager and friend. He also brought me the wisdom of his years of studying the Word, giving me perspective to chew on related to faith healing, my feelings of
injustice that God felt silent and encouragement to continue working it out with the God of the universe. He prayed for me with the compassion of one who knows, had no judgement for my “tantrum,’ for lack of a better word and just showed me the heart of the Savior in those few minutes on the phone.

Our evening was filled with friends who are family, the laughter and fun that were exactly what I needed.

The next day, I just rested, read, wrote and then another evening with dear friends. God was meeting all my needs with these interactions, prompting me to rest and just be. Behind the scenes I believe he was knitting together reminders of his presence, his love, care and meeting of my every need with the people in my life, his love and truth.

Sunday morning found me trying hard to get moving and get ready for church. All of the sudden, as I walked from my room to the bathroom and then the closet, my legs seemed to “remember” how to walk…

I stopped, taking in a breath. Before that moment, my movements had felt so forced, awkward and not my normal. But in that moment, my legs seemed to just take a few steps without me instructing every step. I looked at my husband who was also getting ready.

“Watch me walk a second, does that look normal?” I asked Matt. He nodded, then I asked him an even weirder question.

“Show me how you walk across the room.” Funny, he didn’t even flinch. He smiled at me, maybe shook his tush a bit and showed me again how to walk. In that moment, the tumblers in my brain seemed to fall into place a bit. It was both so strange and so miraculous. I have been waiting for this body to go back to normal, or at least find a natural pace without the lifelong spasticity I’ve had. Why this particular morning?

I think part of it was God’s very grace in saying, “I am not going to take CP from you. But I am here with you, I know you are kind of at your wit’s end. I am going to answer your prayer for relief differently than you are asking for. But I will always answer you. I am always in this with you.”

I felt the angst that had been building inside me since Friday at least (and probably longer), begin to dissipate with the feeling of Jesus’s presence in my steps. I felt the peace I had been seeking start to push the frustration from my body and a little bit of confidence in my steps move in and replace it.

In the few days since, I have not had to work nearly as hard for each step, emotionally or physically. I have been able to be kinder and more mindful with this body, trusting that the knowledge of how to walk is still there. Some of the overcompensating tendencies are settling down, which means also the pain that comes from overcompensating is mellowing as well.

I am stunned with the way God answered my prayer for relief this time. It is not the miracle that I hope for, that one moment I will have CP and the next it is gone. But, it is a miracle in its’ own way, that this body does indeed hold memory and that things are improving.

Thank you Jesus. Thank you for the permission to be angry, weary, lacking understanding and not holding it against me. Thank you not giving up on me. Thank you for the people in my life that show me more of who you are and meet me in the right ways and time because that is your prerogative. Thank you for relief that is different than I hoped, thank you that your ways are so much higher than mine will ever be. Thank you for the grace and mercy of new steps and that you are always in it with me.

I pray that you see God in the most unexpected places today, in the love and presence of people who are with you and are the very representation of Jesus. I pray that if you are feeling hope or hopeless, that you experience the presence of power of Jesus in the most amazing ways: the safety of loved ones, old things made new and surprise answers. I am praying for you…

Both/and

xoxo

A matter of faith, hope and not getting the answer we want

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I can remember paging through the Bible often as a kid. The pages were tissue thin, had a sound all of their own. I loved the “red words.” When I learned they were the words of Jesus, I loved them even more. I could feel the aliveness of the Word; hope, love and power seemed to flow out of the very words of God, breath and life in each verse.

I can’t tell you how old I was, but picture a very young version of me, lying on my stomach and paging through the mysteries of the Bible. Suddenly, I come across John 14:13-14 (NIV), which states: “And I will do whatever you ask in my name, so that the Father may be glorified in the Son. You may ask me for anything in my name, and I will do it”. I remember sitting up with an understanding (and hope) for what this could mean for me personally with cerebral palsy. It may have been a little like asking Santa Claus for my heart’s desire, but not toys.

That’s where that particular memory fades…

But over the course of my life, I can remember praying with all my heart, with all my trust and belief in God the Father, Jesus and the Holy Spirit, that cerebral palsy would be removed from my body, my being. As I’ve studied scripture, the stories and miracles of Jesus, the healing he performed, it has been a point of wonder, confusion, frustration, hope, despair and yes, continued faith. The paralytic, brought to Jesus by his friends, rewarded for his faith with get up and walk…

The woman who bled for years, healed as Jesus’s garment slipped through her fingers… can you imagine the moment when she felt his very power heal the ache in her body that for so long kept her prisoner from her friends, community and life?

Parents ripped apart with the death of beloved children, only to witness the tender words and power of Jesus to give life and breath back…

Those judged and exiled from their community due to disease and pain, healed in an instant, quiet word from Jesus…

Yes, I have drank these parts of scripture in as a child, teen, young adult and still now as a mom and woman who has loved Jesus longer than I haven’t. I wrestle, praise, cry out, plead, love and surrender, over and over again.

I am again reading through the Bible, through the lens and wisdom of the Bible Project. It has been so transformative. I am learning and understanding the background, context and some of the history I have so longed for in my life. I find myself craving the Word in ways I only dreamed of.

As I began the New Testament (again) this week, it threw me off to feel a familiar sadness, despair, longing, jealousy. I began reading the Gospel of Matthew. Then Mark and the stories of healing, redemption and wholeness leave me feeling so many conflicting feelings.

“Son, your sins are forgiven.” Jesus tells a paralyzed man. “Which is easier, to tell him, your sins are forgiven or get up and take your mat and walk?” The next few sentences became about the lessons, the teachers and his authority. All, important things. But as I have felt so often, became the question in my mind…was he healed because of his faith? Does it all come down to me not having enough? Could that be why the answer for me has always been “no?”

As I am reading the gospels, there is such a painful, familiar both/and, the ache of faith and belief, and the answer for me being, “no.” It is a massive mystery to me, the ways God heals some and not others.

In my work, I hear so many things:  hope and restoration, the most difficult, hopeless, despair and many things in between. And I have learned to live with not being able to understand it. The family whose child died on vacation, the woman diagnosed with cancer in the prime of her life. The teens living without their beloved mama when they need her the most, the cancer that takes life far too early. The infant who begins breathing against all odds, cancer that goes into remission against great odds. Hard – won sobriety and strength, day by day.

I was speaking with a client, who talked about the fear of impending decline for a brave loved one who is valiantly fighting cancer. I was listening, then gently asked, “How is this between you and the Lord?” I internally expected the familiar sense of unfairness that often rises, “why our family, why so soon when there is so much life left to live together.”

“I just feel gratitude that we’ve gotten to be together this long.”

I was so moved and afterword, thanked God for what this client had taught me in that hour. As I’ve wrestled with my own “whys,” this week, the clients’ beautiful perspective came back.

Even though my limited understanding struggles with the mysteries of Jesus’s ministry, who and how he chooses to heal and how to live with waiting to understand it all, for me, the overwhelming truth of grace and mercy in it all reminds me again and again who Jesus is…

If I am going to love him, then I must accept HIS very being, the good, and the things that will not make sense to me in my limitations. I am thankful that he invites me to bring my pain, confusion, even jealousy sometimes, and he changes those, even if he doesn’t heal CP this side of heaven. I am thankful he transforms my difficulties into gratitude and surrender…

And I DO love him. So much. So, like any relationship, I continue to learn, love and know him. I continue to pursue his heart, so good, right and so intensely full of love. And I embrace the mystery of “no,” knowing that when it is time for my yes, the YES will be tender, loving and redemptive.

What a day that will be, for us all. Until then, I pray for you in the yes’s and no’s, the heart-bending difficult and the glorious good. I pray we can be there for each other, in it all. I pray that you (and I) can try to keep loving, trusting and knowing God’s heart, no matter what. Because it is so worth knowing….

Both/And

Xoxo

James 1:17

Dear John and (*Sarah),

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When we parked my wheelchair on the lawn at The Grand Rapids Symphony Picnic Pops a few weeks ago, I was preoccupied. You see, I was finally going to see, in person, Sutton Foster. I could go on and on, but the short version is, when I had my youngest daughter in 2011, Sutton was in the middle of Tony Award Season for ANYTHING GOES. I happened to catch her and the cast on Good Morning America and was completely mesmerized. The real truth is, I am always, always captivated with dance. The power of the human body, the control and the beauty is especially poignant to me as a woman with cerebral palsy.  I cannot imagine being able to dance, move or even have the body of dancer. I often dream of it in heaven though and the role model of my heavenly dance has been Sutton Foster since 2011.

Somehow in June I became aware that she was going to be performing very near my hometown and I nearly lost my mind.

Hubby and I made the evening a date night and I could not have been more excited. We parked our car and as I leaned over to hug him and tell him it was already, even before the show started – a perfect date night, a parking attendant gently knocked on the window, looking sheepish. Hubby opened the door and she said, “Would you like a golf cart ride to the seating area?”  I was grateful, told her so, and then made a joke about our quick hug. “Oh, you guys are so cute!” She said.

A golf cart ride through the meadow, with tree frogs already singing. Dusk was still a bit off, but I looked forward to sitting and talking with my love before the symphony started. The driver of the golf cart dropped us off at the entrance to the park where the stage was lit and ready. A volunteer directed us to the ADA seating and though we had to go over some uneven grass, hubby is a pro. He parked my wheelchair and then unfolded his own camp chair and sat down close to me. An accordion player was on stage and it was the perfect “picnic” backdrop. His joy playing the accordion was palpable and the music was lovely. I glanced around, taking in everything around me…lots of joy, laughter, food aroma, instruments beginning to tune up; crickets, and –

I lost my train of thought as she stood up in front of me. (She looked like a Sarah, even though I have no idea what her name really is.…) I couldn’t tell how old she is, but her shirt caught my attention first. SheRUNS Grand Rapids. Running, is another longing that goes unfulfilled because of CP. I smiled thinking of her getting to run, looked at her familiar steps, the AFO’s on her legs and the way she held her friend or family member’s arm.

It ALWAYS catches my attention when there are other CP warriors in my proximity because the statistics for CP are 1 in 374. And even in that, because of the range of affectedness, the number is more like 1 in 20,000 when you think about seeing someone else like yourself with CP. Yes, I definitely notice my fellow warrior friends. I felt our similarities, even though I didn’t get to meet her.

While I was watching everything around me, someone else arrived in his motorized wheelchair, came to a stop next to hubby. I immediately knew he was another CP warrior. But it was also his smile that caught my attention first. His person was beautifully attentive and I was so touched, because I know this devotion from hubby.

His body had more contractures than my own, his hands curled with spasticity. While I sat quietly considering the warriors around us, I felt a certain kinship. And then, a huge wave of what I can only describe as “survivor’s guilt.” As I heard him speak to his person about unwrapping his sandwich, his speech was also impacted by CP. I sat thinking, how lucky am I? I am moderately affected…AND I AM affected. I sat wrestling with both realities, neither of which I can deny.

I felt an odd pull to engage with John so I struck up a conversation…

We joked a bit about the lack of cloud cover and the hot summer sun. I teased him about stealing the fan around his neck, that we would pay big money for it… I introduced hubby and myself to both he (John) and his person. She was crocheting and began telling us about winning first place at a recent craft show with an entire nativity she created. John smiled a few minutes later and told me, “you can get cheap symphony tickets because you are a wheelchair user.” We joked again, “I guess there is one perk to having CP.” (A joke only someone with a disability might get away with saying…)

John was completely engaging and delightful. Hubby and I so enjoyed our conversation. Still, my heart was weighty with guilt and questions. I am very aware of the world. I am certain that many would be awkward regarding engaging with John because of the “differences.” Hubby bantered with John while we waited for the symphony to start and I loved that too. Yet while I sat there, the weight of the ease of our life and the realities stayed with me…

Suddenly, the symphony began and there, in person were Sutton and Kelli O Hara. I was in awe…

Sutton Foster seems to be a lifelong dancer. I have memorized some of the clips I have seen, especially with tap dance. She put her tap shoes on, the notes of Anything Goes began and I cried at the beauty. But I think I also cried a bit for so many of us who can’t dance, but nor do we have some of the most simple functions like walking unattended or at all.

It was, an evening full of both/and.

I will never forget any of it – the moments of sitting in a crowd, three (that I could see) of us CP Warriors; the massive sense of gratitude that I have that my affectedness with CP is not more severe, the grief I feel that anyone suffers with disability at all, and the tremendous beauty, and awe at the talent in the world.

I so wanted to tell Sutton Foster what she means to me, but that was not possible. So, dear Sutton, if perhaps this writing finds its’ way to you, thank you for inspiring me. For sharing your gifts, talent in both dance and song and for the joy you bring.

Thank you Jesus for these moments that I am not entitled to, but am gifted with. Thank you for my people who help, understand, love, support and honor the things that matter to me.

Blessed beyond measure.

Both/and

Xoxo

Psalm 16:9

World Cerebral Palsy Day, 2024

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I find myself in a strange, yet lovely and new spot as I age. I am far more accepting of myself, the roles that I am called to, the ways these change like the tide and the ways they are beautifully and achingly the same. My role as “mom,” is ever-changing as my kids also age. With my oldest in college this year, my 17 year old son on the very brink of adulthood and my 13 year old daughter changing before my eyes, I would be remiss if I didn’t take an honest look at how I am changing as well…

They don’t need me the same ways they always have; they need me in different ways now. (By the way, THIS change is also wrought with both/and, the grief of changing family dynamics and the exhilarating moments of growth.)

Yes, I MUST acknowledge both/and as our family shifts a bit…otherwise, I forfeit the beauty and right-ness of God’s plans for all of our lives, rather than becoming bitter, fearful and sad at all the independence and therefore, change, that plays out in every moment of every day in our family.

There are other changes too…

I have been working for two full years with EMDR International (EMDRIA) to become a certified EMDR clinician, which will reach completion this week. Just as quickly, I will begin the process of becoming an approved consultant with this ground-breaking organization. As I look at the next chapter of this career I love dearly, I am focused on bringing continued perspective and growth to brave clients as well as assisting other therapists who also care deeply about complex trauma and the healing work of EMDR.

I am a part The Fred Rogers Educator’s Neighborhood for the next year as well. I am very honored to have been accepted by Fred Rogers Institute for this year long study. Along with a group of others who have been impacted by Mr. Rogers, we are together learning  how to utilize Mr. Rogers’ wealth of knowledge, study and perspective in many areas of child, family and  professional development. Though we have met only twice, I am so thankful to rub shoulders with others in the world who genuinely believe, like Mr. Rogers, that kindness really does change us all. And heavens, don’t we all need more kindness in the world?

As there always is in life, there are difficult adjustments too: this week, two significant deaths in our world. Though I specialize in grief and loss, it is still very personal when it happens to you or in your very personal corner of the world. Losses bring us to the opportunity (I say this so gently,) to look back, to grieve again or in new ways and to use losses to inform how we want to LIVE going forward.

There are new and enduring friendships, growth in so many areas as we have recently come home, again to the church that played such an important part of my life from age 14 – 24. God has stretched, challenged and blessed our family in profound ways in the process of leaving our former church, grief like I have never known in that process and the faithfulness of finding a new church community. It is both the biggest blessing to be cared for, to be vulnerable and to love and care for others in this new and not new church home.

Finally, there is the both/and as World Cerebral Palsy Day was observed on October 6, 2024.

It is a heart-wrenching thing, this part of my identity that I so wish wasn’t AND after many years of grappling with what it means for and about me, to find pride, hope and love for myself and fellow CP warriors. It is so holy to see, validate and celebrate the bad-ass-ness (I made that up, can you tell?) that comes with living with and caring for those with this disability. This week, a friend finally got to bring her son (who has CP) home from at least a month’s stay in the hospital for complications with seizures and other physical issues. I am stunned by her son’s (and her own) positive attitude after so much. For as much shame as I have carried and overcome in my lifetime around my own diagnosis with CP, it is gift to be able to smile and be proud on World CP Day.

Here’s the thing…God is not, will not and has never been surprised at the ways he created us, the things we do need to go manage here, apart from heaven and how we are limited in our humanity in the midst of these things. He IS with us, even if it feels like he absolutely IS NOT. Deuteronomy 31:8 says, ” The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”

Ohhhh, that’s such a hard one, isn’t it? We are so human in that feeling that says, “why does God put me through this? He COULD change _________________…..”

I hear it multiple times a day and my own reaction is understanding the question AND compassion. What I hear in that phrase, I immediately  think, “oh, he is NOT, putting you through it; he is holding you, as he himself hurts that this is happening too.”

I do not understand all the mystery that surrounds the what’s, how’s and whys that surround God and his sovereignty. I have been there too, crying in rage, frustration and desperation. I have also come to a place where there is more peace in releasing the whys to God’s care and fully trusting him anyway…

I suppose that is how, after many years, many feelings, many experiences and many prayers, I can joyfully put on my green World CP day t-shirt, raise a “cheers,” to my fellow bad-asses, and hold space for that rather than the negative.

I am curious, how are you experiencing change in this season? Maybe we can hold each up, give more care to ourselves and others and float on these crazy waves of change rather than fight them…

God, who is in it all, through it all and who holds it all together: Thank you for understanding our limits, frustration and even anger when things aren’t changing for the good. Thank you being near, always. May we seek your understanding, your heart and greater trust in your love and goodness. May we see ourselves and each other with your vision, compassion and desire for whole-ness. May we know love and joy as only you can give.

xoxo

Both/And

Deuteronomy 31:8

Leaves on a stream, Montana and taking deep breaths…

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(For my love).

“Shhh….” My love wrapped his arms around me, my heart hammering and breath fighting to get down to my lungs. “Imagine a canoe, gliding through the water, no sound, other than the water of the river. Drops drip off the paddle, look around and just see everything with wonder….”

After he’d described this to me a few times, I felt my body begin to settle, my muscles gradually aching with an unwinding from being tensed up due to CP and anxiety. I couldn’t feel each heartbeat any more, which was good, because I was calming. My love just continued to hold tight, and the grace he gave stunned me – I’d never known a love like this one and never will again. It is the closest I can imagine to the love of God, which I know was God’s very plan for marriage. Still, if I am honest with you, it is tough to feel worthy of this much love and grace, from both Husband AND the God of the Universe….and both seem to lavish it on me over and over.

This river is a long, unintentionally cultivated image between us, born out of many things. It is my favorite, most calming imagery when my emotion brain has highjacked my system, when my thoughts race and I can’t seem to slow them down; when I am triggered by, something. Anxiety among those with CP is very common, but we know that those without CP are also greatly impacted. The numbers of those diagnosed with anxiety has sky-rocketed in the last 5-7 years.

I hear it over and over in counseling sessions: the moments of flight, fight or freeze when something alarming sends a signal to our amygdala to release cortisol and adrenaline (emotion brain). In the same instant, our ability to access logic and thought, problem solving and sometimes the “obvious” reaction (logic brain), is rendered useless until something calms that overworked amygdala.

For nearly as long as I have been a licensed MSW and practicing counseling, this concept has been an important part of my sessions, at least once a day; but often, more than that. It is, along with both/and, the most important concept that I teach. It is not uncommon to have a laugh with clients who after a few times hearing it, are lovingly complaining that once I teach it, they can’t unhear it. Believe me, I get it! I even eyeroll myself at times when I just want to rant and engage in emotion brain, but instead, the words in my head are, “deep breaths, smell the flowers, blow out the candles.”

I use so many analogies with clients, some funny, others poignant and others downright silly, but I don’t know….maybe we all do better if we have a picture in our heads along with an important concept. I often ask them if they remember old cartoons when someone is panicking and breathing into a brown paper bag? While we giggle about the images, this is how it is with our amygdala: they just need AIR…slow quiet breaths in order to get back to a “normal level of stress,” turn off the flood of adrenaline and cortisol and return to logic brain.

For me, there are a couple instant images when I think about managing anxiety: anxiety floating like leaves on a river and Montana.

When I was an MSW intern at our local Hospice, I soaked up as much knowledge as possible from my gifted supervisor and the entire team, a multitude of disciplines and so many books on death, dying and the grieving process. One such book that left a lifelong impact is Dying Well by Ira Byock. It is a book filled with the truth as I and so many others have have lived it in regards to death and dying. While that entire year spent at Hospice was life-changing, I think the book normalized and encouraged the lens that was already developing for me, the lens of value, dignity, respect and normalcy in all areas of life, not approaching death or grief as a taboo subjects but instead, striving to be with our friends, family, neighbors, communities and even acquaintances in this stage of life. It was another layer of not wanting the assumptions, not about someone dying, their thoughts, needs or purpose. “We needn’t wait till death is knocking at our door to realize that the treasures in our lives are the people we love or have loved,” says Byock.

The book has a way of showing how the pace of slowing, how the being with one another IS the gift, even in end of life moments. It is the vision of release, slowing drifting as the river carries the leaves: our fears, pain, desire to fix, our deep grief in the loss of ones we love. All of these images have become the very fabric of my being. Acknowledging, processing, grieving and being at peace.

I drank up every sentence in that book. At that time, Dr. Byock’s blurb in the back pages said that he lived and worked in Missoula, Montana. And at the time, that was my only frame of reference for Montana. One day, after a long work/internship day and evening classes toward my MSW, I told my boyfriend (now husband,) “I think we should just run away to Montana. I want to go work with Dr. Byock.” He looked at me quizzically and I explained, Dying Well, my admiration for Dr. Byock and how the holiness of Hospice work was seeping into my bones. He hugged me tight and said, “I’ll go to Montana with you….” (there is a reason he is husband.) From then on, when I had a particularly rough day or a very inspiring one, I would somehow insert or inquire about going to Montana. And he always says the same thing: “I’ll go to Montana with you…”

We’ve been together for nearly 23 years and all along the way, Montana has remained a dream. Kids, homes, dogs, life, required our finances and to be honest, the time has just not been right. Though I now sometimes surf VRBO and Airbnb when I have a day and dream of Montana, hint shamelessly and somedays, just threaten to book our vacation, we have not YET. When we watched the series, Longmire, a few years ago, I even decided on the river I wanted to find…then found out is ACTUALLY in New Mexico! Still there are rivers waiting in many places…and watching Yellowstone has stoked our desire to go, in all new ways….

But we haven’t yet…

I think the dream of Montana and it’s calming power is actually in the imagining. Not that I don’t want to go! But I think if the idea of the river, log cabin, canoe and horseback riding can instantly calm me, then perhaps I am afraid to change the dream with the real live experience…

Do you know what I mean? Have you ever hoped for a thing and then it FINALLY arrived and the luster wore off way too soon? Then it was just over….. I would be heartbroken if these images that have been so steadfast and comforting, the splash of the river and the drips from the canoe somehow changed in real – life. And…we really do want to go find my Longmire River. I KNOW deep down that Montana’s beauty will be unparalleled. And…I really want to go sit on the bank and thank Jesus for the majestic landscape, to hold my love’s hand and say, “I’m so glad…we finally came to Montana.”

I pray you have ones that will hold you during moments of inspiration, fear, anxiety and everything in between. I pray all the dreams and hopes that God has placed within you will be realized, ten-fold. I pray that you can see him everywhere from the beaches in Michigan, fields of Ohio, the evergreens of Portland, the crashing surf of Hawaii and wherever your place is….

I pray you are inspired by leaders in your field, that hope and dignity abound and that we all can one day not need images to calm us, but that God’s presence instead floods every inch of our beings.

I pray for the richness of living well and when the time comes that grace and mercy usher us to the feet of Jesus, the arms of God the Father hold tight with peace; and HIS gentle murmur, all shall be well.

Both/And

1 Peter 5:7

xoxo

Perspective….

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(Disney part 4).

June 21, 1996: I had barely turned 23, was enjoying life, post Hope College and still a huge Disney buff. I lived in the small ranch home I’d recently purchased that had been my grandpa’s, with a beloved roommate. She was strong, smart and a person with whom I felt known and understood. She has an amazing voice, taught me a lot about Jesus, heartbreak and acceptance. I worked for a local grass-roots relational ministry with teens that both challenged and grew me in ways that I still feel. I felt in some ways as if I was finding my place in an adult world and yet, not…I was still so young, with so many questions, hopes and dreams.

God was moving and changing me in ways only he could…ways that were impossible to see.

Have you been there? Do you know that feeling too? The feeling of both knowing change is happening and holding awareness that there was so much more going on than what it seems?

Roommate obliged my Disney fascination that day and we went to see The Hunchback of Notre Dame which was just released. True to the current Disney Renaissance, the music, colors and story were breathtaking. But this day, I couldn’t see any of that.

In what felt like a speeding semi-truck carrying 3000 pounds slamming into my heart, I stared at that screen as Quasimodo listened to Frollo in Out There: “You are deformed, you are ugly, (they say) you’re a monster.” Something struck like an arrow in my heart that somehow, believed some of the same about myself.

Maybe you’ve been here too? Suddenly struck by big feelings in a VERY inopportune time, that surprise and reveal something about yourself you had NO awareness of…

I sat in uncontrollable sobs, not understanding the suddenness, the bigness or the depth of these tears. One part of of me literally tried to wipe the tears and get my shit together and another wanted to weep for this sweet character at the hands of evil on the screen, for anyone who had felt the same and for my own very raw and unexpected pain….

Roommate was a gift, put her arm around me and handed me a grease-soaked napkin to wipe my tears. She was one of the few in my life that knew my CP insecurities at that time, a safe place that I didn’t even need to explain this gush of “ugly crying.” She may have understood those tears better than I did myself at that moment to be very honest. At the time, she and my best friend were two of the safest people I’d ever known.

I cried throughout the movie, the cry of being “undone -” during God Help the Outcasts, a song that still levels me; watching Quasimodo receive the love and respect of Esmerelda and his longing for something more. My 23 year old self believed I would always be dismissed because of my disability, could not see any normalcy in my being. This is often how I understand the way we all have distortions, particularly about ourselves, because for the longest time, I had them too. At least to a much greater degree than I do now! (Thank you Lord for redemption, even of our own perceptions….)

Over the course of this career, I have heard hundreds of cognitive distortions: “my smile is ugly,” “God cannot love me after all I’ve done wrong.” “I will never get over this.” “I am a complete failure….” “There is no hope, Stacy. This will never change.”

Whew….do you hear all those absolutes? My radar picks those up, quick! Gently, I nudge back…”always? Never? are you sure?” Then comes a (sometimes, involuntary) eye-roll….

Perception IS strong…and…truth is stronger.

While this is one tiny glimpse into some of my perceptions, we ALL, because we live on the fallen side of heaven, carry distorted perceptions. God in all his goodness, has led me toward truth, his truth of who HE made me (US) to be: “fearfully and wonderfully made;” – Psalm 139:14. “valued;” – Matthew 6:26. “known.” 1 Corinthians 8:3. “rescued, redeemed and forgiven;” Colossians 1:14.

To tell you of the whole journey would take the whole of my life. And to be true, this is not really about me. It is about US, in terms of the human experience.

Disney is in my opinion, is a powerful lens for me, so here is another small example. In Aladdin, we see a “street rat” who knows without doubt (at least in the beginning,) that there is so much more to who he really is. As the movie goes on though, he too, buys into the perception that he is not enough without the façade the Genie helps him create.

It is so vulnerable to just BE ourselves, isn’t it? And…if we can sit with it, tolerate the vulnerability, there is tremendous, beautiful freedom in the reality of who God has created us to be.

It is universal, how we strive to BE better, weigh less, act, cover the undesirable spots, etc. And it is universal…how we all are ALL, are exactly who and how we’re meant to be in the now and not yet. Our flaws, mistakes and insecurities are understandable and covered by the love of God, IF and WHEN we have the courage to hold them in that light.

Quasimodo, throughout the movie, finds himself changed, from within. Because of his courage, his ability to receive love and respect from Esmerelda, his perspective of himself is largely changed as well. From Disney movies to stories in our everyday lives, to the very way God commands the wind to blow…so too our perspective of ourselves, others and the world around us can and will shift. I am profoundly thankful that it is God alone who gives the ability to change at all.

Today, THIS very moment, I am praying for you…for the freedom for distorted perceptions about yourself and others. I praying for the eyes and hearts of the the most tender God who calls us each beautiful and chosen. I am praying that we all, each and every, can lean into kindness for ourselves…to be able to receive love, kindness, grace and mercy as we never have before.

“You’re braver than you believe, stronger than you seem and smarter than you think.” – Pooh, Winnie-The-Pooh.
Both/And

Psalm 13

xoxo